PASADENA, Calif.—Biologists at the California Institute of Technology (Caltech) have demonstrated a connection between multiple sclerosis (MS)—an autoimmune disorder that affects the brain and spinal cord-and gut bacteria.

The work—led by Sarkis K. Mazmanian, an assistant professor of biology at Caltech, and postdoctoral scholar Yun Kyung Lee—was published July 26 in the early online edition of the Proceedings of the National Academy of Sciences.

I’ve talked before about hobbies and singing in a post called Hobbies, Compromise and MS. I finally decided to upload a recording of me singing something! Not opera though. I’m not brave enough for that yet.

I’ve been playing with Audacity (BEST free music editor out there IMO) and came up with this – it’s all me singing, 14 different layers, and although I know there are a LOT of errors in timing and pitch, I’m still pretty proud of it!

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So there it is, my proof that hobbies don’t need to end with a medical condition, or going on long term disability. Consider taking up a new hobby that suits your current skill-set, since you NEED to find something enjoyable in your life! Or work with something you’ve always been interested in but haven’t had time to experiment with. I finally have time to play with music and harmony! It’s a learning experience – from this I learned I REALLY REALLY need a metronome because I actually sang each part slightly slower than the last, and I did the lyrics last, so by the time I got to them the timing was incredibly WAY off. But I did my best, and I think it sounds pretty good.

Hobbies are really important for your peace of mind. I made the mistake of cutting myself off from my hobbies for a LONG time, and my confidence and self-concept really suffered as a result. Hobbies help keep you rounded as a person, the opposite of “putting all your eggs in one basket” as I had done with work. I needed to rediscover my hobbies just to feel human after my “basket” suddenly disappeared. It took a long time, but I’m starting to feel better, because my hobbies are things I can actually do! Singing is a reminder that I didn’t suddenly stop being a person, with skills and talents, after becoming unable to work.

I’m going to try and post something music-related every Monday. It may be a description of how to make a video like this, or another song, or a cool tutorial. I am also open to suggestions here, just comment below! Yay for Musical Mondays!

I especially love the first article about small changes leading to big improvement. It’s in the Winter 2013 Issue. I love the idea of baby steps, because they’re small, non-threatening steps you can actually take right now, and baby steps in sequence can still lead to something huge.

REMEMBER: You don’t have to figure out everything right now. You only need to know what you want to do NEXT!

A few posts ago I mentioned that I had joined Weight Watchers and it, along with the Wahls Protocol, was ensuring I got the nutrition I need in my diet. I’d been experimenting with diets and diet modification for years, talking to doctors and nurses and registered holistic nutritionists… and usually came out with more questions than answers. Questions like:

– If I’m eating right, why do I need all these supplements?

– If YOU AGREE I’m eating right, why are you recommending more supplements?

– What do I ACTUALLY need to take, and in what dosage?

– What do I need to eat, and in what amounts, to get the nutrition I need to cut back or eliminate the supplements?

I discovered that if someone is making a living (or part of their living) selling supplements, they will always have a supplement to recommend, no matter what you’re already taking. I also discovered that medical opinions on supplements for MS vary widely. Everyone agrees that I should be taking Vitamin D, but I’ve been told anywhere from 2000 to 5000 IU’s a day, and somewhere I even read up to 8000 or 10000 IU’s. At one point, I was taking something like 14 pills at once, with all the different supplements.

I hate taking pills. I’ve mentioned that before. That was what inspired me to start looking for food-as-medicine type information. There’s nothing extra for these people to sell, no supplements or whatever, although they may push the occasional book. That’s okay, I’m fine with buying a book or two. It’s certainly cheaper than 14 supplements a month.

I was chatting with a Registered Holistic Nutritionist, who mentioned her Mom had been diagnosed with MS, and she’d found this amazing Ted Talk from a woman who had used diet modification to control her symptoms. This woman was Dr. Terry Wahls, and she went from a tilt-recline wheelchair and secondary-progressive MS to horseback and remission in something like a year, purely through diet.

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Here was something I could get behind. I was totally willing to change my diet and my eating habits, because I believed from the beginning that the answer to most of my problems was in what I was eating. I just didn’t know what to change. So I toyed with the Wahls diet. I bought her book, “Minding My Mitochondria,” and read it. Not cover to cover, since some of it was a little too scientific for me, but enough to see what she was talking about. And I slowly started eating less processed foods. And more vegetables. And less grains. Then I took the plunge and went gluten-free, which is one of the most painful things I’ve ever done – my Mom’s Italian, Dad’s Dutch, and we survived on pasta and bread. But suddenly, one day it just stopped being so awful. My biggest discovery is that I can’t use substitutes. Gluten free bread is inedible, so I just don’t eat bread anymore. Cookies and muffins, sure, because they’re supposed to be dense and heavy. I can’t do substitutions because I have a very firm opinion on what food SHOULD taste like, and what the texture should be. So I just cut most grains out altogether, and I don’t even miss them. I’m reintroducing some into my diet, on advice from a Registered Dietitian, but it’s quinoa, rice and oats, mostly, and for now only once a week. I really try to eat more nutrient-dense foods, and starches just don’t have as many nutrients.

I also toyed with Dr. John McDougall’s diet, and I tried a Paleo diet, but if something doesn’t make sense to me, or (more importantly) doesn’t FEEL right to me, I won’t embrace it wholeheartedly. No one source of information, or one type of diet, ever felt completely right to me. Until I joined Weight Watchers.

I know, I know, I sound like a recruitment poster or something. But seriously, the new system doesn’t contradict any of the dietary recommendations that I decided to follow over the last few years, and it actually makes it a lot of things easier for me. I use their system to keep track of all the fruits and veggies and animal proteins and other good things I’m SUPPOSED to be eating, and it’s actually LESS restrictive than what I’ve been doing by myself for the last while. I’m eating a lot more now, and a wider variety of food, than I was allowing myself before I had these guidelines.

This is what I’ve done to combine the Weight Watcher tracking with what I got out of Dr. Wahls’ book, and I ran it by a Registered Dietician to make sure that my new planned diet was healthy and safe – she gave me two thumbs up!

– I aim for 9 cups of water. This may sound like a lot, but I make a lot of smoothies and soups, and I count the water I use in those as well. Plus, since starting Modafinil, the persistent dry-mouth makes me WANT even more water!

– I aim for 5 to 9 servings of fruits and vegetables a day, which is easy if you like making soups and smoothies. I assume 100 grams is a serving, and I label each serving check-box with a colour: red, orange, yellow, 4 greens, blue, and white. White is NOT starch, it’s the sulfurous veggies like cauliflower and mushrooms and onions. According to Dr. Wahls, keeping track of colours helps to ensure you get a good balance of all the different micro-nutrients you need, maybe not every day, but over the course of the week.

– I aim for two servings of healthy oil; one could be a teaspoon of olive oil or 1/8 avocado.

– I aim for 6 ounces of protein in a day, at least half of which will be animal protein. (If it had a face, it’s animal protein.)

– I aim for three servings of dairy – I react funny to cow milk and cream, so I stick to yogurt and cheese, and I use a LOT of almond milk, which also counts as dairy. Not sure why, but I’ll take it!

– I aim for at least one serving of fish a week, and one serving of a non-gluten grain. I’ll increase those as I learn to cook more with them.

– Last but not least, I aim for 2000 IU’s of Vitamin D, a Calcium-Magnesium supplement, and a multivitamin. That’s it.

THIS HAS MADE MY LIFE SO MUCH EASIER! I just have a little list with check boxes, and I try to check my list off every day. No more fretting about what I can and can’t eat. No more going hungry because I can’t figure out what I should eat, or going crazy and eating EVERYTHING IN THE PANTRY. And believe me, with a fruit and veggie heavy diet, I have more problems eating ENOUGH points worth of food than I do going over my daily allowance. Also, Weight Watchers encourages writing down every little bit of food you put in your mouth, and I’ve expanded that to include EVERYTHING, meds and supplements too, and since I’m writing all that down it’s easy to keep track of energy levels and hunger levels as well.

So there’s my take on food, nutrition and diet. Just remember, what works for me may not work for you, and it took a few years of trial and error to come up with a way of eating that’s healthy and comfortable for me. I hope this inspires you to find a healthy and comfortable way for you – it’s completely worth whatever time you spend on it, in the end!

Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”

At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.

So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!

PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!

I’ve decided that part of living life as an Adventure is doing something new, or something you don’t want to do, every day. Especially if it’s something that scares you. So, this morning, I finally took the plunge and did something I’ve been putting off for about 3 years, due to fear.

I opened a trading account with an online brokerage. And I funded it. (The fear is still making me a little nauseous right now, and I think I’m still in shock!)

A little history: When I started my blog, I was dabbling at learning about online options trading. I’ve been ghosting the classroom site for YEARS! I’ve been virtual trading (with fake money) on and off, sometimes successfully, sometimes not. Mostly not – I really didn’t take it seriously since it wasn’t real money.

The ironic thing is, I’d started taking classes in the first place because I was afraid of what would happen if I lost my job or became unable to work. I didn’t trust the government to take care of me. But guess what?

IT HAPPENED!

The worst thing I could think of (in my privileged Canadian life) already happened. I could no longer continue working. And I still didn’t open an account. I was too busy. (Yeah, busy feeling sorry for myself!) I didn’t want the responsibility. I didn’t want to take anything else on. And then I moved. And then I moved again. And then I moved again within the town I moved to. But you know what? I got tired of the excuses! I came to realize that the only reason I hadn’t jumped in was FEAR. What if…? What if I haven’t learned enough yet? What if I don’t remember how to apply the principles? What if my brain discombobulates (again) and I can’t focus enough to do it? What if I’m too tired to concentrate? All these reasonable things covering up the real fear: What if I’m no good at it? WHAT IF I FAIL???

Today I found my answer in another question: What if, in a year from now, I look back and STILL haven’t even tried? What would THAT do to my self esteem, to my confidence, to my current idea of self-worth and ability? That’s where most of my fear comes from – not recognizing my current self in the memory of my abilities. I don’t know what I can or can’t do.

So what if I fail? Then I fail – but I don’t think I will. The other day on Twitter somebody posted one of my favorite quotes, by Thomas Edison: “I have not failed. I’ve just found 10,000 ways that won’t work.” So I posted back “Dear Mr. Edison: I haven’t found 10,000 ways that won’t work yet, but I’m working on it!” I thought I was being tongue-in-cheek, but I was actually telling the total truth!

We can only succeed if we give ourselves the chance to fail.

Holy Crap!

That was a real “A-ha!” moment for me. Sounds so simple, right? But it totally shook my world.

Then I decided it would be a fantastic idea to keep track of my “ways that don’t work” as if they were successes, with a list I’m calling The Edison Tally! I mean, in the end, the only real failure is not trying. How can you succeed if you don’t even try?

It’s a list of “lessons learned” and I’m hoping to add to it every day, since I’m committed to doing something new every day, and it won’t all work perfectly right away.

I’m hoping you, my lovely friends and readers, will help me add to it too! Just leave a comment at the bottom of this post, or on the Tally page itself, and I’ll copy it in. It’ll take me a long time to get to 10,000 “ways that don’t work” without you!

Today I’m having one of those days. The ones where you wake up cranky and sore and you don’t want to be nice to anyone. I kinda feel like I’ve been hit all over the head with a frying pan – puffy in some places and flat in others. I just tried to be “normal” yesterday! Why do I feel like this today???

I volunteered to be on a friends’ team for a competition called “Winterfest.” It’s put on by the town, and has different types of competitions that all need to be completed as a team. Friday night was fun, there was a karaoke air-band “Mystery Event,” a “run and grab the paper bag and do what the note on it says” relay, and another I don’t remember. I felt fine when I got home afterwards, so I was hopeful for Saturday.

Saturday was a LOT more physical – we had to build a “Truely Canadian” ice sculpture, (actually, carve it out of a large hill of hard-packed snow,) start a fire from a log we had to cut and split ourselves, (I didn’t do that one – too many pointy objects!) a “do the stuff on the list and take pictures” scavenger hunt, and a crock-pot competition that I helped with by eating the results.

Winterfest 2013 Snow Sculpture – side. We wrote our names in yellow snow. Because if you’ve grown up in a small Northern Canadian town, you’ve tried it for real.

Other than the ice sculpture, I really didn’t do much, but with the -20 degree Celsius weather, even the sculpture was too much! I kept thinking “No one who isn’t dealing with this can possibly understand how much effort it takes to pretend to be normal.” I was feeling a bit sorry for myself, when I realized that EVERYONE on the team was dealing with something! Heck, we lost 3 out of 9 people overnight due to illness, and another friend had to leave at lunch on Saturday because his Krohn’s Disease was acting up. I tell you, we’d have WON that competition if we could have added points for every diagnosed condition our various team members were dealing with!

As it was, we didn’t exactly win. We actually got the “If You’re Not First, You’re Last” Booby Prize. I personally considered it a win just for being there, and staying for the entire competition! I think I convinced the rest of the team to look at it that way, and we may even make ourselves a trophy anyway.

But that was then, and this is now, and it’s easy to be all cranky and irritable when everything is sore and you can’t figure out exactly when you should have stopped yesterday. I could get all dejected and say “If this is the price for “acting normal,” I don’t want to do it anymore!”

But then what? I’m not going to hole up in a cave and NOT spend time with my friends. I mean, we’re ALL dealing with repercussions of some sort today. Do I just stop trying? That’s not me. Even a Booby Prize outranks everyone else who didn’t compete! But my limits have changed, my “normal” has changed, and I’m still not sure what it’s changed to. How do I find my new limits if I don’t push at them? Unfortunately, so far every time I’ve pushed, I’ve pushed too far. I’ve never been good at restraint! I’m really struggling with an “all or nothing” mindset. I mean, I feel fine when I do NOTHING, but I get bored and feel guilty for doing nothing, and I have to do SOMETHING. So I do SOMETHING and overextend. I’m just not sure how to find smaller SOMETHINGS to practice on.

So, any thoughts or advice from anyone out there? Have you found your new line, your new boundaries, your new limits? Are you still pushing? What small “somethings” do you strive for? How do you pace yourself in your new world? I’d love to hear some ideas! Just click the “Comment” button below and share some of your hard-earned knowledge!

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What’s Unhasty about Multiple Sclerosis?

Everything! Unhasty means taking time for deliberate thought. Most of what I've done to simplify my life since my diagnosis has been about slowing down, and giving myself time for deliberate thought and action. My goal is to make time for what I WANT to do rather than what I think I SHOULD be doing.